It’s about a primary lady saying why the NHS should not fund kadcyla. "While it is obviously tragic to see young women grappling heartbroken,with the knowledge they won’t see their children grow up,and husbands hollow-eyed with despair that their wives are dying,I do not think we should be led by sentimentality when it comes to sharing out the ever diminishing cake that is the NHS budget "
Well it’s easy for her to say,she’ll see her kids grow up and her husband won’t watch her dying.
It’s a full page spread,I’m speachless!
Some people say things without giving any real thought to what they are actually saying. You are right it is easy to say no funding for treatments when you do not need them but people quickly change their mind when they end up needing treatment which is not available. My own view is that the NHS north and south need to look at the waste in the establishment. Maybe then they would have money. Also I feel that as a country we need to start looking at increasing our nat insurance contributions to ensure that there is money for the expensive treatments which are coming on board. If we dont put it in we cant take it out. Hope that makes sense.
Oh dear , what a awfull and very insensitive comment to make, being a primary does not make her immune to having possible secondaries herself at some point in the future , and sadly if she is unfortunate enough to find herself in that position one day , she may very well be needing some of these treatments herself !!
I would expect to read some of those uncaring and uncompassionate comments from someone who has never expierenced cancer , (though im pretty sure the majority of even those people are not that heartless) but realy, from a fellow cancer patient? it certainly beggers belief.
Yes the Nhs isnt a bottomless pit, we all know that, however what is the point in people donating to cancer research for new treatments if people are not then allowed the funding to have access to them, its like dangleing a carrot then snatching it away, and its very cruel.
The UK is Far from a poor country, 55 million a day just in membership fees gos just to the EU , 22 million a day gos just in Foreign aid , the list gos on and on, imagine just what a difference that sort of money or even just some of it could do for the Nhs?, makes me so very angry that people are dying when there are treatments available out there for them but they are then denied the funding.
I suspect when politicians and those employed by NICE who make all thses decisions on funding for cancer treatments are affected by cancer themselves, and they are forced to look at death in the face, they would very soon change their minds.
What price a Life? , better get off my soapbox now, grrrrr
Am currently a primary lady, and a herceptin lady too.
L x :smileyfrustrated:
Hi everyone - I totally agree with you all. I’m so upset by her callous words towards us - I have sbc but I should stop moaning and get on with it quietly! How dare I ask for pain relief or drugs to help me cope with the dreaded chemo. The nail in the coffin for me though is she is a fellow bc sufferer. She knows what we go through yet she still writes this rubbish. I agree the drugs are expensive but don’t mix that up with what we suffer every day. I’m terrified of not seeing my kids grow up, I’m terrified of leaving my husband to cope with the kids on his own. I want to be there, I want to cuddle, hug and tell them I love them everyday for ever.
She has no right to judge this on her happy ending - which despite her words I’m pleased that she is clear - I’d love to be free of cancer but I’m not. I just wish she had considered bc as a whole before writing this article. It is very offensive and misleading.
Take care ladies and keep well. Much love to you all xxx
Article is at dailymail.co.uk/femail/article-2613613/Ive-breast-cancer-I-say-NHS-shouldnt-fund-drug-offers-women-six-months-extra-life.html but they are no longer accepting any comments.
In some ways I agree but the patient’s own choice has to be taken into account, as does the hype of drug companies trying to sell another block-buster drug for huge profit. The original hype around Herceptin suggested that it could help anyone with breast cancer and women were being exploited in the press begging to have the drug although they were not HER2+ and so it would not have helped them. My take on the recent announcement by NICE was that they were saying that they were not going to fund it at the asking price. In short it is a bargaining maneouvre which they hope will get Amgen to reduce the price.
Although I do not think that you need to go to heroic ends to save a life when the cancer really cannot be cured we all deserve a shot at having some extra worthwhile time to live.
I would also point out that although breast cancer charities raise huge amounts in the EU only about 5% of the research budget goes to fund Metastatic Breast Cancer research, the other 95% goes to Early Stage BC. sciencedaily.com/releases/2010/06/100601101420.htm Why is almost the entire focus of breast cancer research, support and funding being spent in this way? Because the Pink Survivors are seen as the real ‘victims’ of breast cancer, and we are seen as the failures who will not have a positive outcome so we are shunned. One day in October for Metastatic Breast Cancer? In the US those who are ‘previvors’ because they might get breast or ovarian cancer get a whole week!
I would find Ms Murray’s comments to be somewhat vacuous in the face of NHS money being spent on boob jobs for those who feel deprived because they are not a DD+, or the other unnessary work that is carried out for the same reason. If you really need plastic surgery because of a distressing physical problem then fine, but believing that your boobs are too small is not one of them.
I have to go and make my Will tomorrow because of a sudden and severe progression into my liver and possibly bone marrow. I will have to start a combo chemo next week, but I will not go to every length to live any longer than the Quality of that life dictates unless they can give me real benefit. The problem is that drugs are mainly hype and often based on floored trials which really doesn’t guarentee anything in real terms.
This article doesnt instill confidence in anyone this 6 months thing gets me thats a trial that basically means it seemed to give 6 mths disease free survival more than others ,just like herceptin predictions did ,and people have been on that for 10 yrs plus ,why develope drugs and spend all that money on research not to be used ,My onc was on Tyne Tees he was involved in the trial and its actually £60,000 per patient not £90,000 ,I have herceptin and he has ladies on that for 10 yrs since initial trial ,hope I’m one of those lucky ones and if things are available to me I’ll take them no problem and won’t be thinking about an extra 6 mths either cos basically nobody knows x
Hi All
I don’t post very often these days, too busy enjoying life…and on (Kadcyla) TDM1!!!
I’m not ill, as in in pain or mobility etc. I walk 2-4 miles a day and cycle, I’m doing my local ‘Race for Life’ in 2 weeks. Was going to jog it but have a strained groin! ouch!(overdid the training) So may just walk! I feel very well, never had any pain or symptoms. I’ve been kept a very close eye on since dx in March 2009 with IBC and poss spread to my liver. So have been on Herceptin every 3 weeks since then. Went into remission for 2 years but for the last 3 had secondaries to my pancreas. I’ve been on 2 trials, when Xeloda and Pertuzumab stopped working in Dec my Onc. signed me up for TDM1 the day it became available, Started end of Feb.I’ve had 3 lots Last scan shows some shrinkage on nodes and no change on tumor.It is possible there was slight progression between Dec and Feb and it has shrunk down again. It is fairly small anyway, no spread anywhere else. I know I’ve got more than 6 months of life left!! More like years!! Hopefully there will be shrinkage after the next 3 doses… So…this doesn’t sound like someone on their last legs does it?! As it is mixed with Herceptin it takes 30 mins by IV (I’ve a porthacath). I went today,in at 10.45am. I was walking down to the town to have lunch at 12.15pm. So quicker to administer, no side effects for me, I know everyone is different. No steriods, just 2 anti sickness tabs tomorrow as a safety measure. This is possibly the way things will be in the future. There are more targeted treatments in the pipeline. So less time in hosp. in the unit taking up chair space. Hardly any add ons and side effects minimal so imumune system stays strong which in turn means less likely to go down with other infections etc.
I also met a lady today who has signed up for a trial ’ Post operative (double mx) treatment for HER2 Positive using Herceptin with TDM1. She had spread to lymph nodes but all cancer has gone. So they are now trialing it for follow up treatment with primary. So it may become available to all HER2 ladies, and if they are still trialing it then surely it means it will eventually be as common as Herceptin .
As for the article. The lady in question wouldn’t have it anyway as she is on Letrozole, so she isn’t HER2 positive. Basically I think she is being paid for being controversal! As do most of the reporters on ‘Daily Mail’ That’s why I stopped buying it a couple of years ago!
Just thought I’d add my thoughts and first hand experience!!
Hope everyone has a relaxing and sunny Bank Holiday, I’m off from Cornwall to a party near Worthing and then onto Luton… to visit my daughter. Hopefully traffic won’t be too bad as everyone will be coming in this direction!!
Take care all and keep smiling xxx:
In case anyone gets confused, Just re read my post, meant to say TDM1 instead of Herceptin. As ofcourse its all mixed together! Duh! x